My son, a five year old paleontologist in the making, taught himself to read through his dinosaur books. Quite literally. It began with studious distinctions between “Allosaurus” and “Archaeopteryx,” then shifted into jokes that were almost professorial in cryptic tone: “Oh mom, that’s so Suchomimus of you.” For months he would prattle at length about the Therizinosaur, a deceptively nightmarish beast of the late Cretaceous period. He seemed most to appreciate its evolutionary twist from meat eater to herbivore, and the long monstrous claws it once upon a time used to dig up roots.

He also always beelines for the muddiest puddles, he cries when there’s water in his eyes, and he’s terrified of bee stings. And he is really truly unbelievably kind to his baby sister. And then there are moments when time cracks open in a ray of opalescent light, like one recent morning at our place of worship, when the teacher asked for volunteers and there he was, catapulting over the stairs, and next, in an elegant ellipsis of poised stutters and vowels, and in the most deliberate of tiny voices, he read a paragraph aloud about a man that found G-d by gazing at the stars. This kid, who we couldn’t even afford to send to preschool. He’s also beautiful: shaggy hair, big hazel eyes, the paws of a miniature quarterback. And, like one in thirteen kids among him, he has life-threatening food allergies.

It is not only fear of the hard end line potentiality of food allergies, anaphylaxis, that loops through the consciousness of almost all allergen families, but the cavalier nature of reactions themselves. The standard reaction is one or more of the following: hives, swelling, violent, mucousy white projectile vomiting, itchy tongue, throat, and mouth, difficulty breathing, drop in blood pressure -- and the odd and terrible (not unlike many of my son’s favorite dinosaurs, which I only add because I imagine he’d appreciate the mention)-- sensations of profound doom. The signs can be violent, sometimes erratic, literally as incorrigible as the devil: my son finds a stray sesame seed on his bagel, has a momentary itchiness of throat, then two hours later spikes a high note fever and vomits all through the night. The next day he is articulate, sweet as always, but wheezy, and his energy vaporous. Then, for the next two days he acts quiet and vacant, his body easily breathless, and we tend to him with albuterol treatment, quietly poised to call 911.

A retired labor and delivery nurse once told me, squinting into my face while rage seemed to literally run out the sides of her eyes: “How dare they take away peanut butter and jelly lunches, the most beloved food of all children?” Verbatim. And then: “How many people die of food allergies a year in anyhow? Four? Five? That’s nothing.” The number in fact being in the hundreds, a statistic best reflective not of its potential for fatality, which is very real, but rather the eternal vigilance of preventative care. A detail sometimes lost in the mix of general misinformation. My former sister-in-law once, for example, took my son out of her car and placed him heavily on the floor with a slap of his epinephrine to say "Fuck his epis. I’m not taking him with me anymore." And then in an exhale of anger: “Fuck your allergists. He doesn’t need them.”

To them, to the others who hiccup down tunnel-vision passages of “well that’s not my child,” I ask, but what if it was? What if it was your child that you saw swollen and struggling to breathe and were forced to confront the question “is this it?,” had to inject a needle in a swoop to the thigh, to next ride in an ambulance with a smirky non-plussed paramedic through 20 minutes of heavy traffic otherwise averted if the driver had just put the siren on, hating yourself for not demanding it while your child's eyes roll forward and back, finally dragging the paramedic back who responds with the resistance of a wet cat to check on your child and then condescendingly states; “He’s fine. Kids always get hyper from the epi.” “But he’s not hyper. He’s – “; cut-off to discover at the ER that your child may have gone biphasic and now has a collapsed right lung –.

Or another occasion, when your six year old wakes you up in the middle of the night, screaming between pitches of croup, and you run into the bathroom to see him trying to throw up, face red, wheezing, revelation hitting like a meteor “oh my G-d he’s having a delayed reaction,” and the first round of epinephrine and three puffs of asthma medication only subtly work, until the paramedics arrive oxygen tank in tow, “we’ve got this mom,” and in a blink you are in the back of the ambulance again, but this time it’s a year later, and past midnight, and a young paramedic with powder blue eyes and a thick Philadelphian accent holds your son’s quivering hands (a side effect of the medication) while he still wheezes strider breathes, and he calms him down talking about video games and basketball (“he’s a daddy too), all the time your son’s eyes bursting with bigness over the nebulizer mask, an image burned like an arson into your heart. Hours later there is a formal diagnosis: throat constriction, definitive ANA, conclusively made after a second shot of epi is given hours later into the already dead late night, and only after then, does the wheezing finally, finally subside. The source remains idiopathic, unknown.

And then the following days of guilt and your little person continuing to mentally roll around the perception of their own mortality like it was some marble half smashed in their hand, acting out with childish misdemeanors because Christ, they’re five, because where in the world are the words they might have for what happened, and so they're breaking things and not smiling for seven days straight and will not, adamantly will not be hugged. And you, mom, or emotionally repressed dad, are vanquished. Because no one else understands the particular treasure of this child like you do. The bravery. The unreal courageousness of that body, that tiny-housed soul.

When we returned from the hospital after our first stay, my son insisted I make a cut out of his hand and glue it to the wall with a message splayed across the palm, stating, “I am grateful.” The episode had been around Thanksgiving, and as one can imagine, nothing exemplified the feelings of immense love and gratitude more than the semiotics of that little paper hand. For my son had indeed brushed against death during that episode, he told me so himself while holding his throat and asking, “where did grandpa go again? That’s right, Heaven. That’s where I’m going right now;” shortly later crumpling on his bed.

For the most part, we have been blessed by a community village that if not fully comprehending the nuances of food allergies, genuinely tries, and cares. And for that we are immensely thankful. But sometimes, it seems there is still so much unfortunately willful ignorance. And when someone says something callous at best and pathological at worst, and murder and fear tighten my heart; or alternately something so absurd it literally stings my mouth to respond – (because he is little, and who else does he have but me to come to his defense) -- I stop, and instead think of him objectively, and in reverse, seen far away like a brilliant star found at the end of a telescope.

I imagine him and his honey smell and his perfect little fingers, as he pages through a well-worn book. And I imagine, if one were to ask him his opinion on these things, about the people who seem to think the parents of these literally millions of diagnosed children are just being dramatic, or who simply just don’t care, strangers who buttress themselves with narratives like “keep your kids at home,” “helicopter parenting,” or the markedly heinous, “it’s nature’s way of thinning the herd”-- I know in a heartbeat, for he is heart of my heart, how he would respond. It would be with one simple word: “Therizinosaurus.” Evolve. Dig deep.

Hi! My name is Maddox, I am 8 years old, and I am MADD ABOUT FOOD ALLERGIES!

When I was a year old, I was diagnosed with a peanut allergy. Luckily, my reaction was not life threatening. My parents gave me a peanut butter cracker and being 1 years old, I was more interested in smearing it on my face than eating it. I’m glad I didn’t eat it, because my skin quickly broke out into hives. My Dad quickly reacted and gave me a dose of Benadryl and everything seem to be ok after taking it. We visited my pediatrician the next week, who referred us to an allergist. This is when we found out that I was highly allergic to ALL nuts and from that point on I needed to carry EpiPen’s with me.

This isn’t where my story ends. Did you know behind this boy-like face, I am a super hero? The irony to my story is that I love someone with Food Allergies. Nope, not myself. This is my little sister Skylar. This picture says it all, she is full of life and the silliest girl I know.

Since we found out I was allergic to nuts, our home has always been nut free. My parents often checked with the allergist to see if we could test my sister, but we were under the impression the longer we waited the less likely she would be to have the allergy. We started the discussions, but just were too nervous to give her anything. We didn’t think much more about it until the day came to us

I am a pretty big basketball fan, so the sport I love playing the most is basketball. My favorite team is the Wake Forest Demon Deacons. GO DEACS!

January 30, 2016, was a typical Saturday morning. I had a basketball game at the D-1 sports complex, so I grabbed my EpiPen sports belt and we headed to the gym. About mid-ways through my game, I noticed a bit of commotion in the stands. Not long after that, I saw my Dad race out the door. What I learned is my sister shared a granola bar snack with a friend that included nuts. Do you still wonder how I saved my sister’s life? What I learned, is my Dad grabbed MY EpiPen sports belt at that very moment and raced outside to give her a shot of epinephrine and drive her to the hospital, which was directly across the road.

Everything was happening really fast. My Mom made sure my grandparents knew to stay with me so she could follow my Dad and sister to the ER. Once my Mom got to the hospital and was with my sister she called me to let me know things seem to be ok. Whew, thank goodness!

Have you ever wondered why there are two EpiPen’s in a pack? Have you ever split them up? We found out that day, that not having them together could have been fatal for my sister. Things quickly turned for the worse after that phone call from my Mom. My sister experienced rebound anaphylaxis 45 minutes after the first dose of epinephrine, which is rare but can happen 20% of the time, and she began to go into shock again. That’s when you would need that second EpiPen……if you were not at the hospital yet. Skylar’s body quickly broke out into hives and her breathing became shallow and labored, doctors began to work on her to pump her with 3 more doses of epinephrine, antihistamines, and steroids. As my sister was becoming very distressed they tried tubing her, but couldn’t with how fast her throat was swelling. After so much medicine her body finally started to react positively to it and from what I know deflated like a balloon releasing its air. They transported my sister to a children’s hospital nearby to monitor her. She finally came home the next morning. I worried so much about her hoping that nothing tragic would happen after learning all the series of events. If she had not had that first EpiPen at the gym, I might be telling a different story.

SO! This is my person. This is someone I love who has Food Allergies. I want to help kids cope and understand their allergies to stay safe during the hustle and bustle of everyday life. There is A LOT of planning that goes into any type of day/event and the more we talk about it, the safer we will be. I want to start the conversation. I am not ashamed of my allergy and I am not embarrassed of my allergy. Please check out my YouTube channel, Instagram, and Facebook to follow my journey!